Challenging misconceptions about endometriosis

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

Endometriosis is underdiagnosed, taking an average of six+ years for diagnosis but still affecting at least 1 in 10 women. This is due to bias and misunderstanding, esp from doctors. One big misunderstanding is that full hysterectomies, (removing uterus and ovaries), are a cure for endo. There is no cure, and they often heighten the risk for heart disease and cancer later in life for young women. Having endo in itself and not completely and correctly removing it has also shown to increase risk of breast and ovarian cancer. The longer it is the body, the likelier that will happen.

Endo grows its own estrogen and can grow on and spread into anywhere in the body (even the brain), and there are actual cases of men having it. That being said, you don’t need ovaries or a uterus to have endometriosis but often that’s all GYNs choose to focus on, using birth control, full hysterectomies, and other often ineffective methods in what often results in devastating attempts at managing endo.

Another misunderstanding is that only women of a certain age can develop it, but because it grows its own estrogen, it doesn’t require estrogen from ovaries to develop or worsen.

Birth control helps some, but for many, (including me), it only worsens things. Like severity and symptoms, treatment efficacy varies, but the one that is most consistently effective (when done correctly) is excision.

Excision as a treatment for endo came out in ’91, and even now, only ~150 GYNs out of the US’s ~160,000 are properly trained in it.

A damaging number of GYNs in the US still believe endo is caused directly by the uterus and/or ovaries and that it can always be seen through ultrasounds, MRIs, etc. Both are untrue. While some endo can show up on scans, it’s uncommon that it’s seen that way, even when severe. The only sure way to diagnose it is a laparoscopy.

Main (but not all) resources: CenterforEndo.com, Endofound.org, Nancy’s Nook Endometriosis Education (fb group run by licensed retired nurse, Nancy Peterson), Endometriosis Foundation of New York, and MyEndometriosisTeam.com.

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

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All we hurt when we hurt / The universal language

There is an importance to healing I cannot stress enough. Because I was so affected by traumatic abuse so early in childhood, my life, identity, and behavior have all largely been shaped by pain. Truthfully, I challenge the notion that even human beings from seemingly tamer backgrounds are not shaped largely in part by pain. When going over these sentences, I thought a more accurate description might be to add pronouns to these sentences — add perhaps “my” and “their” before “pain,” but that would only distance myself from the ultimate point. There are many layers to this post as there are many layers to every person. Layers vary and appear different. They can manifest differently, speak in different tongues, dress in different threads, dance with different motions, and while sentient beings all hurt in different ways to different severities and we express those agonies in different behaviors, perhaps the greatest irony of all is that the most universal element sentient beings share is what often isolates us most — pain.

Physical pain or severe physical discomfort, at their most banal, tell us something is “wrong.” A bone is broken, and it needs to heal, or a part of our body is exposed that should not be exposed — in the case of extreme cold or extreme heat or a wound — or that not enough blood is getting to our heart or that not enough oxygen is getting to our brain. Prolonged inactivity can also cause physical pain or severe physical discomfort because that in itself tells the body something is wrong and can make things go wrong further within the body. People struggling with their mental health often get caught in this cycle, because already we’re usually struggling with debilitating stressors (and chemistry).

It is important to note that there are medical conditions in which people have a total insensitivity to pain, however rare, but even in cases of extreme dissociation or Antisocial Personality Disorder (sociopathy and psychopathy) where emotional range can become limited, there is a current that makes us universally one, even if separating us in terms of our behavior or reactions to it: pain felt by the soul even if not always the body.

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Protected: CHARGE YOUR VOICE, AND ONCE YOU DO, NEVER STOP SCREAMING. (Trigger warning)

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How do you break the cycle?

Many mental illnesses, like many other chronic illnesses, are often cyclical. For those of you unfamiliar with the term, this means that at times the illness softens or even goes into a state of “remission,” in which the illness is not as prominent, invasive, difficult, and/or et cetera. This is especially true with mood disorders, such as depression or bipolar disorder. I think a full “remission” is rare, but I’ve known people who have reportedly (or rather, self-reportedly) gone for years without symptoms who end up hospitalized after an episode returns. Still, many illnesses are cyclicallike fibromyalgia for example.

The uni-cycle from hell

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090916

Things have been a little flavorful lately in the sense that life has been tasting a little like hell. It’s during these times that my posts here are especially important to me, and I’ve found rereading some of them has helped me get through things but still not very well. It’s amazing how when the depressions grabs you, you start sinking and are so easily swallowed up, like the Swamp of Sadness in The Neverending Story by Michael Ende.

I remember the first time I read that book. I was twelve, and I stayed up all night to finish it. Beautifully imagined, it’s one of the most creative books I’ve ever read. But just like it’s important to read novels from other countries and cultures to expand your mind, it is also important to nourish yourself with positivity and intuitive beauty.

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For the Qs: Why? Why me? Why this?

Pain at its roots is neither test nor punishment. It is trial we are guaranteed simply by existing. Nothing greater than ourselves doles it out. Nothing greater than ourselves cares if we overcome it–so we must care ourselves if we do.

It varies by degrees and duration. It’s a war sometimes; an onslaught. Sometimes it’s an inconvenience. Sometimes it’s something in between and it exists for no other reason than “we exist.” We live. It is not the price of living, as pain in itself bears its own independent value. It just “is.” It exists with us. It offers opportunity, change, growth, and new perspectives. That alone makes us better than our suicidal thinking and our suicidal urges. Because there’s always a part of our pain that challenges us to make ourselves better. We just have to find it.

The puzzle is not pain. We may always be in pain while we live, discrete pain or concrete or conspicuous or not. The puzzle is the reaction. The puzzle is the loss and gain and how the pain is handled. Stop asking yourself, “Why?” and “Why me?” and “Why this?” There is no good reason except that it is proof we are alive. Don’t think too much on it–for, really, what better reason would there be than that?

Questions that are important to ask, questions with more productive and concrete answers, are as follows:

1. What can my pain teach me?

2. How can I make peace with my pain? and

3. How can my pain help me grow?

This is how healing begins.

Love always,

V.